This blog is about health and healing. I will share my life with chronic illness, pain and fatigue of Sjogren's Syndrome and fibromyalgia. Most of all, I will write about living life and coping, using art and other means.

PAGES

BUTTERFLY BANNER

Papercut and colored pencil art by Sheryl Aronson X 5

Tuesday, April 27, 2010

PLANNING A GETAWAY WITH CHRONIC ILLNESS

Going on a getaway with chronic illness may require extra planning. Make sure the person you are going with understands any limitations you have in energy and endurance. There may be times when you both cut short your activities so you can rest. Are they okay with that? Or, they may go on without you while you rest. Are you okay with that? We go through grief over and over again, when we discover new things we can no longer do like we used to. Focus on the pleasure you get from what you can do, rather than bemoaning what you can't do. Be flexible with your schedule.

Some people divide the day into 3 segments- morning, afternoon and evening. If you have activities planned for 2 segments, plan for down time the third segment. Adapt this to your own needs. You may need 2 segments of down time. Or maybe you can go 3 hours then an hour off. Your down time may need to be complete rest, or you may be okay with a passive activity, like a bus tour or movie. You know yourself best. Going on a cruise might be the perfect getaway. There are plenty of activities going on both on board and at the ports, or you can just sit by the railing and relax. Each person can chose thier own schedule.

Take with you anything you need to make your getaway go smoothly. My backpack was extra heavy for my getaway with my sister, because not only did I have my C-PAP (to help me breathe at night), but also water for the humidifier, because I didn't know what kind of water they would have at the B & B. Take any snacks you might need, and with Sjogren's, make sure you have enough to drink. Something to think about- If you are constantly sipping water, you may be washing away any protective saliva you do have. It is better to drink your water in larger quantities less often, and use artificial saliva in between as needed. I like to chew gum with Xylitol (I like Trident Wild Blueberry Twist- it seems to hold its flavor best) to keep my mouth moist while walking or hiking. Make sure you have all your medications, both perscription and over the counter. Include all your drops, ointments, etc. that you might need, including for an extra day or two, just in case. (I was wondering about the people in Europe who got stranded for days because of the ash cloud last week- what did they do if their meds ran out?)

An overnight trip may be too much for you. A one day trip can also be rejuvinating, or half a day may be what works for you. Even going to a park to sit for awhile can help. Anything that gets you out of your routine and rut will be refreshing. Remember to enjoy what you can do, don't focus on what you can't do.